Rheumatology

Last week, I passed my Mod 1. Regular readers may know this was the ninth or tenth attempt. And I passed it, not powered on by confidence or love or hope, but by the things that have always been there for me; Righteous indignation and pain.

So, the first manouevre in the test is the manual handling. This is where the rider has to push the bike from one bay into another without hitting the cones or dropping the bike. There are no official guidelines on how to do this, and due to being skinny and (critically!) extremely disabled, I tend to do it by sitting astride the bike and pushing it backwards with my feet. this is, according to the actual rules of the test, perfectly legit.

According to this examiner though, that wasn’t manual handling, and manual handling explicitly meant “Standing beside the bike, one hand on the bars and one on the tail”.

This of course took literally five minutes of agonised pushing to move the bike from one parking bay to the next, complete with shoulders exploding out of socket, discs herniating, literal crying. But, I did it. And from that point on, I was fuelled with finest grade vitriol. I did a control exercise and figure-8 that could have gone in a training manual. My slow ride was a stately crawl. I U-turned with enough room left over to drive a bus through between my bike and the kerb. In the high speed exercises, I hit the speed gates at closer to twice the required speed than below it. I passed, with two faults (One for having difficulty in the manual handling, one for taking a while to brake after the hazard avoidance) and booked straight in for my Mod 2.

I got home, and found out that my Grandmother was in hospital with a broken wrist. So the next morning, I loaded up the bike and rode North.

I’m not going to talk about her being in hospital, because that’s not my story, but suffice to say that being up north, even though I got to see Sambuca Guy again and go to Ocean Road for a curry, and watch the ships on the river, was exhausting.

I also got pulled over by the police on the coast road for having a burst light – So they got out the screwdrivers and spare bulb kit, patched me up, and sent me on my way. Because even the police are nice on Tyneside.

Anyway, after three nights away, I rode home, getting to Thirsk just as it started to snow, then fell into bed in a complete pile.

The next few days will be possibly busiest. Here’s my last few days, as they’ve been, and my plans for the next weeks;

So, yesterday was rheumatology, with not really Prof McG, but a doctor under him, who I’ll call Dr Blue.

We’ll start with the way that by the time I got there I was so violently car-sick I passed out in the waiting room. Shaking, freezing skin, grey lips, grey to the roots of my nails, eyes shut to stop the spinning, clutching a sick-hat like it was a rosary, whilst the two waiting nurses fussed and patted my arm and looked genuinely concerned. And as the carsickness wore off, the pain in my shoulder faded in.

After about a quarter of an hour of waiting, one of the nurses put me in a consultation room, on a bench, with pillows, and I drifted off into quiet overwhelming-pain land for a little bit.

After a while, Dr Blue arrived, and she was worried for me. Step one was a really good sign – Asked what was wrong with the shoulder (though didn’t seem to understand that “main problem” didn’t mean that the rest of me was fine), got me to take my shirt off, then got me to move my arms through a series of symmetrical movements to view the difference between the two, then the arm on its own to check for the pain (Determining that the pain was “all the time, other than when I was lying completely flat”) and then asking about when the pain started, and if there’d been any examinations since then.

When I said, “No, not deliberately, but I did get x-rays when I’d crashed my bike two months ago” she immediately got me back into my shirt, and moved into the next room, where she could access my records and bring up my images. Nice, clean, non-cracked bones, no calcific tendonitis. Very good chance that it was just a lot of soft tissue damage from constantly dislocating and relocating.

She said that, once again, I was doing everything right – Keeping the muscles warm, trying to move as much as I could, getting anyone I could persuade to massage it to massage it – She approved of my having decided to train myself as a physio, she approved of my using Maitland for basic manipulations, she approved of my using topical irritants – acupuncture needles, chili oil, self-harm – and she generally just approved of my attitude. She said, even without needing prompting, that hypermobility syndrome tended to frustrate medics, purely because it was so difficult to treat, needed such a multi-disciplinary approach, and would just relapse all on its own, even if you were doing everything right, sometimes.

She sent another letter to the GP’s practise to ask them what on earth had happened to my Stanmore referral. I still don’t really expect to ever hear about that again.

Then she asked about what medications I was on, and when I got to “diazepam” she got the pinchy-frowny face that doctors only get when they’re about to say something either wildly ignorant or wildly offensive.

“How much of that do you take?”

“Sixteen miligrams, a month.” I said, “Which is why most of the time I just have painful spasms that make my nails go blue.”

“Oh” she said “That’s good, it means you won’t get addicted. Nasty stuff.”

I decided not to bother protesting. No point in getting labelled as a drug-seeker, when I’ve been coping, just barely, with a lot of pain. At least I’ve been coping. But then I had to protest, because she decided to add;

“Have you tried any complementary therapies? Like aromatherapy, maybe.”

I think my facial expression could only be described as anatomically improbable and upsetting to small children.

I didn’t have the strength to complain. I just suddenly, immediately, wrote her off as an ignorant fool. It was probably a good thing that it was right at the end of the consultation, because up to that point she’d been perfectly reasonable and had mostly been talking sense, even if she did partake in the unforgivable delusion that addiction was drug-dependent.

I left, taking the prescription for capsaicin down to the pharmacy, and booking for my next three-month appointment with Dr D again, which will hopefully this time actually be with Dr D.

My right shoulder once again feels like there’s a hot petanque ball stuffed under the scapula. My right hip has exploded.

And about a week ago, I woke up feeling as if I’d slept on an electrical plug, pointy-side-up, right at the base of my spine. At first, I thought I really had – Under the pile of sheepskins and cushions and cashmere throws on my bed, there’s an electric blanket, and the blanket has a big square lump where the wiring is attached. Sometimes it moves around the bed and ends up under some part of me, and I end up with a minor cramp wherever it dug in. This hurt a lot more than usual.

This time, I reached around to feel for the plug, and instead of finding it I found the usual three-inch-thick pad of fleece, and my own coccyx, which was sticking out at 45 degees and so much as touching it felt like the evil version of slamming your elbow into a doorframe. I flipped onto my side, lifted up my knees, keeping my back board-straight since I couldn’t move it without intense pain, and started howling.

The howling brought Dearest out of the shower, who quickly poured the remains of a bottle of morphine down my throat, fed me 4mg of diazepam, 75mg of diclofenac, and managed to get at least one of my legs straightened out and the other supported on a cushion, so that I could relax in place. Half an hour later, I was relaxed far enough to reduce the luxation at least partially, and then half an hour later I reduced it a little bit further, then again, and again, each time the inflammation pushing it a little way back towards a luxation, and each time my work putting it back a little bit closer to “correct”. Two steps forward, one step back. Pain. Pain. More pain. That afternoon, I phoned rheumatology and was told “They’d get back to me in 48 hours”.

A couple of days later, still trapped in bed, Best Friend and Best Friend’s Mum came over for the afternoon to look after me, with Best Friend holding my hand, occassionally massaging the worst of the cramp out of my spine, and generally trying to keep my mind on the cricket and the thought of going on holiday, and off the burning pain in my back. By this point, my shoulder pain had reached the point where I was having to breathe in between shots of pain, which was understandably making me tense and twitchy. Meanwhile, Best Friend’s Mum made me hot water bottles, found cushions to stack my limbs up with, fed me, and washed the dishes so that I’d have something to eat off later.

A couple of days after that, still in bed but starting to shuffle around a bit now, Dearest spent several hours and a lot of diazepam working the spasms and cramps out of my back and shoulders, almost managing to get the right shoulderblade (the one with the white-hot petanque ball under it) to lie flat for a couple of seconds. My tail, by this point, lay almost completely flat to where it belonged.

And now it’s today, and I’ve finally got through to Rheumatology, who aren’t even at StJ anymore, they’re at CA. Dr D will see me at some point in the next month, for my regular appointment, but moved forwards as far as he can because this is fairly serious stuff. He’s had his hours cut, and thus also his number of patients cut, but as far as anyone can tell I’m still one of his.

I’m just about hobbling about the house now – Not well, or with any grace, and still only by taking literally as much morphine as I can tolerate (Having had the last of the diazepam earlier in the week, because obviously I am better off having violent, painful spasms than taking a naughty drug that some people might sometimes enjoy taking for fun) and doing as little as possible Tomorrow, the glazier is coming over to fix one of the window handles, then in the evening I’m taking Dog to the vet’s to get his ten-day checkup for his teeth (He had sixteen teeth removed last Monday. It was a terrifying day for both of us). After that, I’ve got broadly nothing to do until Saturday morning, when I in theory have a univerity tutorial.

Judging by the stabbing pains in my shoulder that’re continuing without respite and making it hard to breathe, I’ll probably not be going anywhere. Oh, and somehow during this hellish week, I’ve managed to finish my own essay for my second TMA and write one about “My EDS experience with reference to using the Internet for support” to be a piece of primary material for someone else’s PhD, which is rather fun. And she’s in the North too, so it’s nice to have met another northern zeb.

Two medical-related phone calls yesterday. This is basically me settling in for Winter, when my physical and mental health both go from bad to worse – I take about twice as much pain relief and antispasmodics in winter as I do in summer, my sleep pattern goes to pieces, I eat less often and less well, usually coinciding with my guts slowing down, and I get much more upsetting and graphic suicidal thoughts, not to mention the increase in self-harm for both pain-relief and mental-illness related reasons.

The first was to Rheumatology, to find out what was going on with Stanmore and what was in the letter that had been sent to the GP.

First is the bad news – It looks like I’m having to arrange that Stanmore referral myself, since once again it’s gone around the full cycle of “Nope, nobody knows what it is, or when, or where, or anything.” without making any progress. So I have no idea how to do that, or even if I can do that. By the original reckoning though, it’s three months overdue, which is starting to get ridiculous. I’ve been told to “Just chase them up” with both my GP and Stanmore, which as far as I can tell basically means nothing.

(On this note – Anyone who has any experience in following up referrals, how does one do it? I’ve in-theory got letters from my GP, Rheumy and UCLH Hypermobility all saying that I need to be referred to Stanmore, and all of the above claim to have sent letters to Stanmore to refer me as well, multiple times. So other than just turning up at Stanmore with a suitcase, what do I do next?)

Then is the worse news – The letter that was supposed to say “Plesae give this patient more diazepam” instead says “Thank you for giving them a small amount of diazepam”. These are not the same sentiment, at all.

So I nearly went into my GPs practise and looked like a drug-seeking liar, because I would have said “Dr D said to give me more diazepam” and they would have read the letter and said “No, he didn’t”.

So I’ve booked an appointment with my GP for the 8th, at 16.50, and I had the strangest exchange with the receptionist whilst doing so.

“Who’s it with?” I asked, basically just checking that it wasn’t with Dr Rh, who I personally consider to be not-a-doctor and more like a stale breadcake in a suit.

“It’s with Dr [Name unclear]”

“Who?”

“The Lady Doctor”

Happy at least that this precluded it being with Dr Rh, I hung up. But this baffled me. Of the people in this practice, I’ve got a clear mental picture of about half a dozen of them. Dr Rh is, as I’ve said before, a winnet with legs, Dr Ch is sympathetic and keeps a casual eye on my mental health, Dr R is viscerally horrified by my dislocations but willing to work with me to hack the most efficient possible use of my medication and the system, Dr L is great for mental health but scared of the drugs that I take, Nurse Practitioner Rs is a lovely person and technically very competent, but knows when she’s stumped and isn’t too proud to refer me up the tree when needed. And I don’t think I’ve ever sorted these people by sex. In fact, I can’t think of any situation where I’ve used “Does this person have matching genitals with me?” as a selection criterion.

This is probably all complicated by the fact that I’ve barely ever socialised with people who are the same gender as myself. I don’t seem to consistently feel a gender in the same way as most people do (Though for about three months near the start of this year I felt much more definitely “man!” than usual, which was weird. I usually just use it as a shorthand for “I am a fairly masculine person” or “Most people consider me to be masculine”) so I don’t have that immediate sense of solidarity with people for being the same gender as me that a lot of people seem to get – Especially in fields which are skewed in the direction that makes them a minority (For example, women in physics, men in childcare, etc).

But anyway, that’s all by the by. I’m seeing a doctor on the 8th, it’s about my sleep pattern, and I think it’s a doctor that I’ve not met before, so this could be really complicated.

Today was my regular-irregular meeting with the rheumatologist, Dr D. D is lovely – He remembers what I’ve been up to (Or at least keeps very thorough notes), and fiercly advocates that my GPs are generally idiots, that I need to get into Stanmore as soon as possible, and that I’m right in just being my own physio now.

On the “GPs are ignorant” front – He thinks it’s ridiculous that I get 16mg of diazepam a month, especially since it’s so much better for me than taking lots of morphine for the spasms. He’s sent them a letter to complain and tell them to stop being so ridiculous and hidebound.

On the Stanmore front – He says that I’ve held up my end of the bargain, and got into improbably good shape (He was a bit cautious about asking if I’d put on weight but, when I said gleefully that I had, he enthused about how much healthier and stronger I looked now) so that the NHS should hold up their end of the bargain and get me into inpatient treatment. He was impressed with the amount of swimming I was doing, and said that he wasn’t sure if he, or most other abled people, would do the same, even if they likewise didn’t have day jobs. He’s promised to bother Stanmore for me, so I don’t have to keep doing it myself.

He’s also promised to follow up with the gastroenterologist and the hip surgeon – We both agree that I really want to avoid surgery, but that having someone look it over and give an expert opinion is a good idea.

And then, as seems to be increasingly traditional for me – I came out of hospital and went straight to the bike garage. I’d not been intending to buy anything, but they had in the exact helmet that I’d been looking at previously, reduced to half price, so I bought it. And then I got home, rang someone that was selling a Suzuki Marauder on the other side of the country, and am heading over there tomorrow to have a look at it. Not to buy it – Not even to promise to buy it – but to get plenty of photographs and have a better look at it.

Not sure if this is hubris, or things just all going well for a change.

Tomorrow night is swimming – Definitely looking forward to it, haven’t been since Friday. Six days is far too much of a gap. Admittedly mitigated by spending three days with Best Friend in the gap, but still.

Before going into rheumatology, I had the usual blood-pressure check (124/90, high because I was in so much pain by this point already) heart rate (85bmp, again, pain) and weigh-in.

I spluttered when the nurse told me my weight, and she immediately tried to console me; “Oh, that’s not that heavy, I mean, you are very tall!”.

I did the maths in my head. “That’s just under nine stone!”

She loked at me blankly, then smiled.

“See? Not bad.”

I twitched. “I’m five foot nine. I’m supposed to be about ten stone. I’ve lost a stone, without noticing it. And that was my weight in a leather jacket and assault boots.

“Ooh well lucky you then, even lighter! You can knock off a couple of pounds for them as well!”

On reflection, this may have been when my uncontrollable eye-twitching started. How have we reached a point wherein everyone is supposed to want to lose weight, even if they’re waking up ravenous in a haze of ketones every morning, and haven’t had a full meal in days? How is it that, even though if the nurse had really looked at me, it’s obvious that I’m underweight and suffering because of it, her automatic thought was that I must think I’m too fat and to try to console me that I can always be thinner?

Below the cut is a, probably fairly disturbing actually, photograph of me as I’ve been all morning – Naked but for my boxers, basically immobile. [spoilered for people who just wanted the commentary, and not my self-indulgent whine].

I’d gone to Rheumatology at StJ yesterday, to see Dr D, which was productive;

-He’s going to send me for a hip and shoulder MRI

-He’s going to point me towards a constulation with a hip surgeon* and a shoulder surgeon

-He’s going to chase Stanmore for me (Hooray!)

-He’s going to get my GP to put my Diazepam on repeat

-He’s going to look into different brands of pain-relief patch, just in case

-He’s going to ask C1, the head physio, to give me a list of textbooks and things so that I can be my own physio from now on

-He’s going to give Physio G a bollocking for being an inattentive, ignorant shite (even the Student Nurse that was in with Dr D gasped at the utter twattishness of saying to a hypermobile patient “Oh, no, there’s no such thing as a hip sublux. A Student!)

-He’s writing me an Official Letter to say “PLEASE for the love of all that’s good in the world stop trying to give him lidocaine!”

-He’s going to send me to another psychology service, to see if they’re more appropriate in helping me deal with my combined mental (The mixture between my EDS-linked stress, depression and anxiety, and my suicidal thoughts and bipolarity).

On the way into his appointment, my back and left shoulder went into spasm, and I ended up taking a lot of morphine (20mg) on the way in. Setting himself apart as a REALLY good doctor, he took the time to let me get settled (Perched on the balls of my feet on top of a chair, shoulders hanging forward like a chimp, as is my wont when I’ve fucked up my back and collar) and went immediately for both reassuring back-pat (At the prescribed 0.03m/s, circular, centred on the point of pain) and for genuine investigation of the worst of the shoulders – Feeling around the acromiclavicular and sternoclavicular junctions, measuring left against right, sticking a finger (carefully!) into the glenoid process and investigating under the scapula and around the bits of the spine (as usual, just between the lumbar and thorassic vertebrae, where I’m now sure there’s a problem) that hurt. He let the morphine do its work before trying to have any sort of sensible conversation, and he promised to send a letter covering the appointment, since he knew that it was both important to me, and that it was likely to be something I’d forget due to all the pain. He also pointed out that, even if I wasn’t actively noticing it, all the muscles around my shoulder and my back were in spasm, and that that was probably a bad sign.

On the way out, my back started getting worse. I had to drop to a squat three or four times in the corridor down to the main entrance (I may or may not have mentioned this before, but one of the great joys of StJ is that the main entrance hall looks like the departure lounge of an airport, and I’m really fond of it. Plenty of warm, accessible places to sit, a coffee shop and vending machines, and accessible toilets. Also always supervised.) and can vaguely remember wobbling down the central staircase since the lifts were still broken.

The next thing I’m really clear on is feeling a bit of spite towards the obviously-healthy paramedic who nipped into the disabled toilets ahead of me, then curling up on the bench outside the toilet, in pain, then handing off my medic alert bracelet and EDS card to someone who worked for the ambulance service, then being in a transport chair, then being almost flung out of the transport chair when it went over a bump, then a lot of screaming as my back arched to the point that my ribs at the back slipped under my pelvis, then a lot more screaming, then being in a cubicle on a bed in A+E, hearing someone say “He’s stopped screaming, but he’s biting his wrist really hard and I think I can see blood” then “We’re going to give you some morphine…” and having a syringe stuck between my teeth. (A further 10mg). I later found out that between the howling and sobbing, I was muttering “I just want to go home, please, let me go home” which apparently influenced my treatment.

At some point, I managed to re-open my eyes for more than a couple of seconds, and found myself talking to a rather sweet young doctor T, with blond eyelashes, who batted away my apologies, fitted a cannula to my right hand (And he was right, he WAS the bloke to go to when the patient had odd veins – He listened to which one I told him was the good vein, used a very tiny needle, and investigated with the needle tip under the skin before going for the venipuncture, to ensure that the vein had run out of escape-room and that he wouldn’t just tear it open, like so many people did) with two ports – One for more morphine, one for dexamethasone.

It was probably about half an hour later that the nurses came and flushed it – cold up to the elbow, perfect – then admitted the morphine (Stopped at 4mg, due to a local skin reaction) then more water, then dexamethasone (No idea how much), then found me a cold flannel for my arm to stop the itching, since my veins in that arm were now black and raised up tight against the blotchy red skin with inflammation.

More time passed. I slept, I think, and the pain started to subside from “screaming whenever I stopped sobbing and biting myself” to “unthinkable” to eventually a dull ache through my whole body. The doctor came back, and volunteered that my best chance of saving the day without needing any worse intervention was to hurry home and take as much morphine as I could hold once I got there, and maybe a diazepam or five, then sleep it off.

One of the nurses removed my cannula, and I apologised for having been snitty and short-tempered, which she accepted with an “In that position, I would probably have been just as snappy” and I was allowed to go home. I shuffled out through the front doors, poured myself into a taxi, and broke down onto the settee in the living room. For the next five hours I drifted between sleep and dreaming, half-watching TV and feeling my left eye start to tic violently.

The tic continued, and by evening it had been joined by a horrendous ache in my sartorius in both thighs – that was an ache I would have expected in the morning, perhaps, after the previous night’s long swim (A performance in which my lanemate was a little dismayed that the Go-Faster-Juice I was liberally swigging as I churned through a 200×4 IM and 2km freestyle was morphine sulphate, not some kind of strong stimulant) but now it was happening and it really, really hurt.

Leery about taking more morphine (With the morning’s slow release and the fill-up when I got home, I was pushing 100mg) I fell asleep at about 2am, and slept like the proverbial brick.

Today, I’m sore, and my eye is ticking, but I feel remarkably good considering the previous day. Here’s to the dexamethasone doing me some good, and once again, hurrah for compassionate doctors who know that sometimes their job is just to alleviate suffering.

Also today, my letter arrived telling me that I have an MRI booked for the 1st of March (Yes, the Sunday) at 1.20pm, at CA X-ray department. With instructions to take out all my jewellery and bring a CD – I’ll probably go for Reise Reise or Rosenrot. Or both. This of course reminds me that I have no idea where any of my CDs are.

Next post is going to be a little pictographic coda to this one, about a single encounter with a nurse which was the only bad encounter all day, and it wasn’t really her fault so much as Society’s fault.

*”Who’s the coolest person in the hospital? The hip surgeon! What about when they’re on holiday? Then it’s the hip replacement!”